Feeling the fear

this post is cross-posted from Get Out Gertrude by Jenny (jaydub26)

This post is dedicated to my friend Sarah who blogged with me on Mothers with Cancer, who died today.

We got to know each other through each other’s blogs and like me she was a bit of a twitter addict and we were also facebook friends.  Even though we never met (she lived in America – I live in New Zealand ) , through all these avenues she became part of my every day life – a real friend, and I will miss her.

 I had planned and written  this post in my head  already but with Sarah’s death, it makes it all the more real.

One of the reasons I don’t write more about advocating for change, education, research, a cure is because it requires me to quote facts and figures – statistics that in my every day life I try really hard not to think about. 

Sarah had metastatic breast cancer

The American bloggers I follow that went to the NBCC  advocacy conference  were given a presentation that gave some facts around that –

From The Cancer Culture Chronicles : In America 30% of people receiving a breast cancer diagnosis are known to go on to develop metastatic disease and metastatic disease accounts for 90% of breast cancer mortality with around 40,000 deaths a year

from Uneasy Pink came a link to a video presentation they were given  (click on the link – I dont have the capability to embed video in my blog) that states in 1991 (in America) the deaths from breast cancer were on average 117 a day , today it still averages 110  ( I would imagine that adjusted and worked out on a per capita basis New Zealand deaths from Breast Cancer would be about the same).

 That is 110 ‘Sarah’s (somebody’s wife, mother, sister or friend ) dying every day from metastatic breast cancer.

My friends Susan at Toddler Planet and Elizabeth at The Liberation of Persephone both IBC survivors like me, also wrote about these statistics and how we needed to change the conversation from awareness to really finding a cure.

Especially around IBC those facts and figures are even worse.  In a recent article Dr Christofanilli, one of the leading experts on Inflammatory Breast Cancer said “most women in whom IBC is diagnosed eventually experience a recurrence and die from the disease—highlighting the need for further research.”(approximately 75%),  and “is the survival of women with IBC in the 21st century similar to that of women with LABC? In a retrospective review of women in the Surveillance, Epidemiology and End Results (SEER) registry, our group has recently shown that women with IBC who were treated between 2004 and 2007 in settings where a multidisciplinary disciplinary approach to treatment is considered standard of care, continue to have poorer survival outcomes when compared with women with non-IBC LABC”

Well the statistics pretty much suck, don’t they, for those of us with  IBC!!  We are living longer with newer targetted therapies  (5 year survival now 40%) but once we are metastatic that is based on  a control rather than cure model. At the moment we will, almost 90% of us of we that get metastases, eventually die of metastatic disease.

I live with the fear everyday that ‘the cure’ will not be found soon enough for me.  But I try not to let myself feel it – if I let myself feel that fear, I would not be able to function in my everyday life.  Be the wife, mother, student, friend that I want to be.

But sometimes I have to let myself feel it and face my own mortality. One of my friends sent me a song via email last week that made me feel sentimental and weepy for the first time since I found out about my liver. The song and the sentiment weren’t anything to do with my cancer but allowing myself to cry over it opened the flood gates and allowed me to be open to feeling the fear and other feelings I had been trying hard to suppress.  That song and two others were on my playlist a lot last Thursday and Friday and as I said to my cancer society counselor yesterday  I actually really liked the way it happened and I thought it was a good cathartic release and much more controlled than if I had let it build up longer.  It wasn’t like I let myself bawl my eyes out uncontrollably. I just let myself think about things and feel things and let the tears fall if they came.  I felt I was in a really good head space afterwards for letting it out. 

I have two songs I listen to when I want to allow myself to connect to those emotions. One is ‘The show must go on’ by Queen and the other while I am not a huge fan of country music is ‘ Live like you were dying’ By Tim McGraw  – both of them are about facing your own mortality and dealing with it, living the best life you can or living your life your way until the end.  Which is what I will try to do.

Don’t get me wrong, I don’t sit around thinking I am going to die anytime soon, but I just acknowledge what is the most likely scenario for my death.  That I will in most probability not live to be an old lady. 

Today I cried again, for Sarah, who lived her life – loving it, finding the joy in the photos she took, her dog Finny (of who she tweeted many pics), her three children and her husband.  Loved your spirit Sarah and hope I can handle things with as much grace and hope and love as you did.

Edited to include what Laurie pointed out in her comment below: it should be clarified that Sarah didn’t have IBC. Her cancer was, however, triple negative, which suffers from the same lack of awareness and lack of research funding as IBC and is (like IBC) also more likely to become metastatic than other forms of breast cancer.

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12 Responses to Feeling the fear

  1. Katie says:

    I’m so sorry.

    Katie

  2. Judy says:

    I can so relate to this post. I also don’t write much about advocacy or research because I do better when I don’t think so much about the statistics and the chances that I have with IBC.

    I am so very sad about Sarah’s death. Just so so sad. 😦 But I’m glad she was in my (online) life for the time that she was. What an amazing, loving woman. She will be sorely missed.

    • jaydub26 says:

      I can’t believe how much I am already missing her. I keep expecting a twitpic or something to pop into my twitter from her. I got so used to seeing her there almost everyday.

  3. Laurie says:

    Sarah will be missed. She was a lovely, lovely person. My heart goes out to her family and all those who knew and loved her.
    I also hear you on the fear. Not to take anything away from your post, though, it should be clarified that Sarah didn’t have IBC. Her cancer was, however, triple negative, which suffers from the same lack of awareness and lack of research funding as IBC and is (like IBC) also more likely to become metastatic than other forms of breast cancer.
    Thanks so much for writing this thoughtful post.

  4. Lahdeedah says:

    My heart hurts knowing that Sarah Streett is no longer here. I love that woman’s words, photos and spirit. To her family and friends, God’s peace and grace.

  5. Jillian says:

    Sarah’s blog was a source of purity and calmness for me. I feel lucky to have read her blog from time to time. My thoughts are with her family.

  6. I’m very sorry to hear about your friend Sarah on my first visit to your blog. You both do great work for the cancer community and hers will live on.

    My name is Nick Hare, and I am the Public Awareness Director for PleuralMesothelioma.com. I came across your site while browsing through websites relating to cancer.

    I noticed that you already had some other related resources listed on your resources page at motherswithcancer.wordpress.com/cancer-resources/ and figured you might be interested in including a link to our site as well. Please let me know if you are interested – I’m available by e-mail at nhare(@)pleuralmesothelioma.com. With your help, we can educate the public about the dangers of asbestos and hopefully save some lives.

    Best Regards,
    Nick Hare
    Public Awareness Director
    PleuralMesothelioma.com

  7. Betsy Sayre says:

    I have not been to this site before now, but I did read many of the comments. Sarah is my husband’s cousin, and although cousins are not always close, with Sarah’s mom and my husband’s mom being sisters, many family events are held jointly. I need to correct the comment that stated, “her two children….”. Sarah and Paul have 3 absolutely beautiful girls, Hannah, due to graduate from HS in 2 weeks, Emily,going into 10th grade, and Evie, currently a 3rd grader. Three of the most amazing girls I have the pleasure of being related, along with an amazing father, Paul (and Sarah’s hubby. We acknowledge their loss, cry with them, state “It’s not fair….”etc, look and laugh and remember times passed through many family pictures. The families will still gather, but will feel the loss always…

    • jaydub26 says:

      apologies Betsy, as I have written in a private message to you the post originally said three but I saw someone else say she only had two – I have now reinstated the right number

  8. Pam says:

    Thank you for the kind words about Sarah. I’m her sister-in-law and I too am missing her tweets and daily pics of Finny sleeping on the couch next to her, or begging for food. We laughed after learning that Finny escaped from his crate/dog room the night Sarah passed away and we joke that Sarah had something to do with it, wanting us to have a good laugh at the expense of that puppy she loved so much. Thank you again.

  9. lisa says:

    I had just found sarahs blog, and then she relapsed and we lost her. My heart is aching for her family, and especially for her kids…but The Lord knows the reason, and she is in His arms, and she is HEALED!

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